Recovered? Nearly recovered? What does it mean?

Discuss autism diets and biomedical treatments of autism.

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Guest

Recovered? Nearly recovered? What does it mean?

Postby Guest » Thu Dec 22, 2005 12:32 pm

When someone uses the word recovery, I assume they mean their kids function at age level, blend in, and can not be picked out of a crowd, are able to think , talk, act, engage, problem solve and handle unpredictable situations same as any other age-matched peer. Isn't that what recovery is supposed to mean?



Reading through the posts on this board I begain wondering about recovery rates and how long parents have been treating their child to get to what is considered "recovered." I know there is not an exact standard for the word recovered, but what is the consensus? Do the doctors who report success or recovery rates have a definition or do they rely on the report of parents?

Guest

Postby Guest » Thu Dec 22, 2005 12:33 pm

oh that was me, Jan.

Guest

Postby Guest » Thu Dec 22, 2005 1:47 pm

Yes, i havent seen anything "definitive" about this and am bumping this up! Really is open to interpretation

respect

rlneub
Posts: 1872
Joined: Tue Mar 01, 2005 6:37 pm

Postby rlneub » Thu Dec 22, 2005 2:31 pm

As listed on our recovered kids page this is our definition:


Recovered Or Nearly Recovered Kids - Our Definition: Kids that have lost the Dx or nearly lost the Dx. Kids that most people will have difficulty distinguishing from their NT peers. Many of these children, though they act NT are still very fragile in matters relating to their health. Many may temporarily regress when they get sick or if there is an interruption in treatment. An example would be like diabetes, though a diabetic person looks and acts like people who are not diabetic, they are sick and need treatment to be able to function. Should treatment stop, their health will start to fail. These children are still sick, but under treatment can be indistinguishable from their peers.



The question is subjective in and of itself. Parents are the ones who usually say their child is recovered. Each parent sees their child differently.

Cured is another issue. Cured means you cannot pick them out from their peers and you need NO INTERVENTION for them to remain indistinguishable.

Guest

Postby Guest » Thu Dec 22, 2005 4:51 pm

Best definition I've ever seen (can't remember where) was that if it walks like a duck, quacks like a duck etc.... I think to make it official you need to pass the ADOS or CARS or some other testing instrument below radar.

I think "nearly recovered" is wide open to subjective interpretation. It sounds pretty good, but since different people may mean different things by it, I'm not sure what the difference is between "nearly recovered" and "significantly improved". I would guess there are a lot of "nearly recovered" and not too many "fully recovered" kids.


Also- it's so much in the eye of the beholder, short of a very, very, very comprehensive testing. I am aware of children who don't qualify for ASD diagnosis based on CARS or ADOS, yet remain socially and emotionally challenged. Right now, from where I stand, I would be so happy if this ever was my son's case. Those kids' parents though, don't consider them fully recovered even though they "look" normal. I met some of those parents at our RDI seminar. It seems that the anti-ASD battle is fought on so many levels, all I can say is thank God that it is unfolding only one step at the time. Here I was, working on turn-taking and beginner's conversation, and here they were talking about abstract thinking and organizational difficulties. Now I understand why they call it "pervasive".

I think this is probably one of the few times when it's OK (even indicated) to look at the immediate next step and not think too much about the final destination, as it's so unpredictable. I know it helped me a lot to focus more on individual skills and less on whether or not we will ever get a cure/recovery.

Alex's mom

Guest

Postby Guest » Thu Dec 22, 2005 7:03 pm

Rick,

I have some questions about your definition of "recovered." I think this is a statement that requires detail, otherwise, parents of recently-diagnosed children may misinterpret.

Kids that most people will have difficulty distinguishing from their NT peers


I'm not sure what "most" means -- do you mean someone with no knowledge of autism, or a professional or parent with experience with autism? Does this mean picking a child out, say in a classroom, or having a conversation with the child?

Many of these children, though they act NT are still very fragile in matters relating to their health


What does "act" mean? Is this an absence of obviously autistic-like behaviors such as flapping, visual stimming, etc, or does this mean that they are functioning as NT peers (in developmental parameters)?

Many may temporarily regress when they get sick or if there is an interruption in treatment.


This seems inconsistent with "recovery" to me. I mean, if you have dealt with "gut" issues, chelated the metals, etc, and your child functions in all ways like an NT child, then how would an interruption in treatment cause a "regression." What would "regression" look like? Does this mean that a "recovered" child would need to continue your treatment forever to appear "recovered."

An example would be like diabetes


I don't see this as a valid analogy, even if it does involve injections. A diabetic person does not just "act" diabetic without treatment, they could eventually die. One could just as easily take a leap with a cancer analogy -- once deemed "recovered" from cancer the patient does not continue aggressive chemo indefinitely. Wouldn't this statement cause parents to unecessarily fear terminating treatment?

This also does not explain children who appear "recovered" who never received any biomedical-type treatment. We don't know what their labs look like, or what would have happened if they had ever received any type of chelator, but they apparently don't need any biomedical treatment to remain "indistinguishable."

The question is subjective in and of itself. Parents are the ones who usually say their child is recovered. Each parent sees their child differently.


Don't you agree that there should be some sort of objective guideline to claim that a treatment has a "recovery" rate? Perhaps like a comprehensive eval demonstrating that a child is functioning within normal limits in all areas (like his NT peers)? Considering the variability of parental reports, do you think the parental survey-type data is valid? This reminds me of what happened with secretin many years ago.

Cured is another issue. Cured means you cannot pick them out from their peers and you need NO INTERVENTION for them to remain indistinguishable.


Having been immersed in autism for over eight years now, I can tell you that this has been the commonly understood definition for "recovered" -- if you are redefining the term "recovered" in your practice, do you feel that the parents understand your interpretation of "recovered?" It sounds as if "recovered" has come to mean "very much improved and not immediately noticeable as having autism."

Thoughts?

Winnie

Guest

Postby Guest » Thu Dec 22, 2005 7:07 pm

One other question:

Are there any parents reading this forum who do have "recovered" children? What constitutes "recovery" (or near-recovery) for your child?

Thanks
Winnie

Vicky
Posts: 46
Joined: Sat Sep 03, 2005 3:51 pm

Postby Vicky » Thu Dec 22, 2005 7:19 pm

I would love an explanation for kids who just "recover" without intervention. My 10yr old would fit rick's description of "recovered" even though he has never had any therapy at all, biomed or otherwise!
He didn't speak a word till past 4yrs old, although made lots of noises, then after echolalia we got scripting and now completely normal conversation.
He is different to NT kids though in subtle ways that would not be immediately apparent to anyone unfamiliar with autism, and infact even parents of children on the spectrum don't always guess!
As for my more severe child I will take recovered any way it comes, actually I would love to be in the position with him to start splitting hairs wondering how recovered he is and if that is the same as cured, it would be soo nice for the question to be relevent.
Vicky

rlneub
Posts: 1872
Joined: Tue Mar 01, 2005 6:37 pm

Postby rlneub » Thu Dec 22, 2005 7:31 pm

In our practice, we have yet to have a cured kid. Some are very close, but still needing some forms of intervention.

As to recovered, I did say this was our definition. Each month, we get patients who upon being tested by a develpemental ped, neurologist, etc get an official pronouncement of no trace of ASD. The down side of this is funding gets cut. They attend normal classes, they interact socially etc. Yet if they stop treatment, they again start to lose language, eye contact, socialization etc. This is not a cured child, but in language, cognition, socialization the child has recovered as far as society and professionals are concerned.

My diabetes example was ment to illustrate a point. Looking exactly the same as others around you does not mean you are cured. Appearence does not necessarily the child is well. Our recovered videos demonstrate that a child can look exactly like their peers, but we at this point do not have one cured child in our practice. Stop treatment and the underlying issues are more easily seen.

Guest

Postby Guest » Thu Dec 22, 2005 9:42 pm

Each month, we get patients who upon being tested by a develpemental ped, neurologist, etc get an official pronouncement of no trace of ASD


That would be compelling data -- do you keep data on this? If so, the evidence might be helpful in determining which ASD children are best candidates or responders for your treatment.

Are these patients who perhaps still have a diagnosis of some sort (just not ASD) or are they officially pronounced "normal?" Do you know if the professionals finding no trace of autism were the same as the professionals who originally diagnosed the condition on the child? What sorts of tests were used? It would be helpful to know so that there is some standardization of "recovery" criteria.

The down side of this is funding gets cut.


I don't understand -- what funding?

They attend normal classes, they interact socially etc. Yet if they stop treatment, they again start to lose language, eye contact, socialization etc.


Is anyone actually keeping this data, or is this anecdotal? I think this might scare some parents.

Here is the most important question:

How long will your patients continue treatment? If you have none that are "cured," but many that are "recovered," but those in the "recovered" category will regress with an interuption in treatment, does this mean that all patients continue indefinately? forever? how long?

????

Winnie

Guest

Postby Guest » Thu Dec 22, 2005 9:48 pm

I would love an explanation for kids who just "recover" without intervention. My 10yr old would fit rick's description of "recovered" even though he has never had any therapy at all, biomed or otherwise!
He didn't speak a word till past 4yrs old, although made lots of noises, then after echolalia we got scripting and now completely normal conversation.


Hi Vicky,

I think that is very interesting stuff -- especially since your son did not begin speaking until later. I have wondered the same. It would be nice to have more info on what may be "sub-types" of ASD so that we know more about best bets for treatment protocols (if any in your case!)

Winnie

srinath
Posts: 941
Joined: Tue Dec 20, 2005 12:33 pm

Postby srinath » Thu Dec 22, 2005 10:02 pm

<snippage>
Having been immersed in autism for over eight years now, I can tell you that this has been the commonly understood definition for "recovered" -- if you are redefining the term "recovered" in your practice, do you feel that the parents understand your interpretation of "recovered?" It sounds as if "recovered" has come to mean "very much improved and not immediately noticeable as having autism."

Thoughts?

Winnie[/quote]

OK so you'd call Our cured as recovered - excellent. Now how about you define cured.
Cool.
Srinath.

momtoMatthew
Posts: 813
Joined: Sun Oct 23, 2005 5:47 pm

Postby momtoMatthew » Thu Dec 22, 2005 10:21 pm

:)
Last edited by momtoMatthew on Wed Jul 28, 2010 2:34 pm, edited 2 times in total.

Guest

Postby Guest » Thu Dec 22, 2005 10:49 pm

Now how about you define cured


My definition of "cure" would be an absence of the pathology causing the condition and an absence of any manifestitions of the condition. I have never heard a legitimate professional, physcian, or otherwise claim to "cure" autism and actually have the evidence to back it up. It is often a term used by quacks peddling treatments on the internet though. Just put "autism cure" in any search engine and see what you come up with.

I prefer the "stroke" analogy -- a person who suffers a stroke can recover functions affected to some degree, or even completely -- enough that the neurological damage that occurred is not noticeable and does not disable them. I think that our children can "recover," some even completely.

I regard a "cure" claim as a red flag (waving wildly). I know of two "professionals" in my area who have claimed children would be "cured." Trouble is, they haven't "cured" any.

Fortunately, since I am not profitting from any autism treatment promoted as "recovering" or "curing" children, I am not responsible for defining the terms or providing the evidence of the claim. Happy to give an opinion though, nonetheless.

always curious
Winnie

srinath
Posts: 941
Joined: Tue Dec 20, 2005 12:33 pm

Oh OK

Postby srinath » Thu Dec 22, 2005 11:07 pm

Oh OK ... so recover is NT with on going treatment/intervention/training. Cure is NT with none of the above. OK.
Cool.
Srinath.

Guest

Postby Guest » Thu Dec 22, 2005 11:42 pm

Oh OK ... so recover is NT with on going treatment/intervention/training. Cure is NT with none of the above. OK.


No, "recovered" is functioning NT with no implicit need of ongoing treatment, because the child has "recovered." If "recovered" children lose language when they stop taking vitamins, I'd welcome the data on that also.

Cure applies to diseases.

Winnie

rlneub
Posts: 1872
Joined: Tue Mar 01, 2005 6:37 pm

Postby rlneub » Thu Dec 22, 2005 11:48 pm

dis·ease ( P ) Pronunciation Key (d-zz)
n.
A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.
A condition or tendency, as of society, regarded as abnormal and harmful.
Obsolete. Lack of ease; trouble.


So, as this is the definition of disease, what is autism???

sashasmom
Posts: 1788
Joined: Tue Sep 20, 2005 7:03 pm

Postby sashasmom » Thu Dec 22, 2005 11:54 pm

http://slatersjourney.blog-city.com/

Here is a blog of a parent who recovered her son using DAN!. Slater's doctor is Dr. Jaquelyn McCandless.

Maybe some people don't believe recovery is the same definition of that others may think.

I believe that children can be recovered from autism. Some parents may settle for a normal classroom with no teachers aid and no need for speech or ot anymore as being recovered.

Some may simply rely on the child losing the diagnosis.

-Crystal

Guest

Postby Guest » Fri Dec 23, 2005 12:17 am

So, as this is the definition of disease, what is autism???


I have always regarded autism as a developmental disorder.

Are you implying that you have a "cure" for the autism "disease?"

Winnie
P.S. Since you are online, would you mind addressing some of my questions? Thanks.

kathleenjj
Posts: 487
Joined: Tue Apr 19, 2005 1:09 am

Postby kathleenjj » Fri Dec 23, 2005 12:20 am

To further complicate a complex issue, I would like to add the following thoughts.

First, this is a spectrum disorder which many believe (myself included)includes ADD and ADHD. These are 2 diagnoses which themselves can vary greatly. For instance, a child who has trouble attending and one who is constantly in detention for his inability to sit still.

Second, to define cured for most of our kids is unrealistic. I know my son was typically developing before the chemicals began to truly harm him but I have no idea how outgoing or social he would have been as a 15, 20 or 30 year old person. Maybe he would have been shy, even minus the toxins and the live viruses.

I think success has occurred when the child or person in question is living as independent a life as most people do and he or she is happy with his or her social situation. Many, many people have medical conditions which require lifelong medical intervention. I will not speak for anyone else but this IS a medical issue for my son. I will feel his treatment was a success when he can learn and interact "typically", evn if it means some life long medical interventions like MB12.

May we all find personal success for our loved ones.
Kathleen
Proud Mom


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